How do I reduce my Hemiplegic Migraine (HM) attacks? How do I identify all my triggers? What are the secrets?
We see these questions being asked over and over again. In the beginning of my own journey, I struggled with these same questions. It’s taken years to find the answers or at least a portion thereof.
These are the keys to Hemiplegic Migraine (HM) care. In this article, we’ll talk about each of them and then explore them in more detail in follow-up articles. Keys 3-5 are the 3-Part Balanced Recipe where you need equal and balanced attention to each of these keys in order to take back some control over this disease.
Key 1: Educate Yourself
In order to actively participate in your own care and be your own advocate, you need to educate yourself. Learn all you can about migraines and Hemiplegic Migraine (HM). Talk with other HMers and learn from their stories. Ask questions and seek answers to your questions.
Key 2: Find The Right Migraine Specialist who knows HM
Many of us are under the impression that doctors should know how to diagnosis and care for migraine and Hemiplegic Migraine patients. I know I was. I trusted that my doctor knew how to care for me and I didn’t question him. That was a huge mistake and nearly cost me my life (but that’s a different story).
We must remember that HM is rare, migraine research is highly underfunded, and there is little research on our specific variation of migraines, i.e. HM. Given those facts, finding a neurologist who is experienced and skilled in migraine care can be difficult. Now try to find one who is also experienced and skilled in HM care.
When looking for a neurologist, seek one who is a migraine specialist. In her article Migraine and Headache Specialist – What’s So Special?, Teri Robert provides a list of what makes a migraine specialist so special. Call his/her office and ask if they have other HM patients and ask about the staff’s experience and credentials specifically in related to HM and migraines. If you are able to travel, seek out patient-recommended doctors as these are the ones that other HMers are already using.
Once you find a specialist, next you to need to determine if this staff will work with you, listen to you, and allow you to be a part of your overall care. You are a key component and voice to your care. You have the right to participate. If this specialist will not include you, you have the right to fire him or her.
3-Part Balanced Recipe
The following three keys are the essential pieces of the recipe for improving your overall health and taking back some control over this disease. Remember that each piece is vital and an equal component.
Key 3: The Right Medications, in the Right Dosages & Combinations for You
Every feel like you’re a human guinea pig with all the different medications and dosages you and your doctor are trying? This process can be very frustrating, especially because at the same time you are probably also working on the next two steps/keys as well. We must remember that each of our bodies and systems are different. Therefore, how we respond to medications will be different. One medicine may work for one person, but may not work for you.
Here is where you need to work with your specialist closely and educate yourself on available medications. Typically we find that we need a combination of medications and the dosages will probably be adjusted throughout our lifetime.
Key 4: Identification of ALL Your Triggers
Hemiplegic Migraine (HM) attacks are triggered by various stimuli. A vital key to your care is to identify each and every one of these stimuli that specifically trigger your attacks.
We’re often asked: How do I do this? We’ll briefly talk about the process here and then cover it in more detail in a follow-up article. Ultimately, this is an investigative process that takes time and active, constant effort. Time to put on our detective hats.
Step 1: Know All the “Potential” Triggers
A “potential” trigger means that this trigger is known to affect other migraine and HM sufferers. Therefore, it is a possible suspect. In a follow-up article, we’ll provide a list of all “potential” triggers.
Step 2: Migraine Diary
Start a migraine diary today. Right now. It does not have to be a formal software program or journal. It can be a simple spiral notebook. You have to get into the habit of writing it each and every day and throughout the day. This diary will provide you and your medical team a vital tool in the investigative process. It shows your history, identifies patterns, and shows what works and does not work.
In this diary, you want to write down at least the following:
- All medications, herbs, and vitamins you take, dosages, and when you take me
- Your sleep pattern: duration, how well you slept, how many times you woke up, did you have difficulty falling asleep or staying asleep, etc.
- Everything you consume, food and drinks. List ALL ingredients including spices, oils, herbs, and if a packaged item list the name of the item so that you can track the ingredients (if you don’t want to list out its individual ingredients).
- Everything you put in your mouth, including toothpaste, mouthwash, floss, breath mints, candy, etc.
- Weather each day including temperature, humidity, conditions (hot, rainy, thunderstorms, snow, windy, etc.), and barometric pressure.
- Stress and stress levels
- Exertion activities, including exercise, sex, etc.
- All symptoms including pain scale (0-10, with 10 being the worse pain you’ve heard had), location, etc.
- Where you went, such as store, sporting event, family event, etc.
- Any trigger experiments, such as “I eliminated xyz today.”
- Anything unusual or worth noting
Step 3: Investigation Time
Now it’s time to be the investigator, detective if you will. Each time you have an aura, migraine, or HM attack, look at your diary. Look back over the last 72 hours. Look for what was different during this period. This process is much easier if your attacks are less frequent, as something should stand out to you. Did you eat out somewhere, even at a friend’s or family member’s house? Did you go anywhere?
Remember that many triggers are also stackable, meaning that one their own (by themselves) they may not trigger an attack; however, when combined with other stackable triggers, they work together to overstimulate our brains and trigger the attack.
Step 4: Elimination Trials
If you are still having attacks from unknown sources, the next step is try the trigger elimination trial process. There are two methods to this process: (1) Eliminate one trigger at a time or (2) Eliminate all potential triggers and then reintroduce one at a time.
Eliminate One Trigger At A Time Trial
In this method, you will select one potential trigger, eliminate it from your world for a 72-hour minimum period, and monitor what happens. If no attacks or symptoms occur, this trigger might be one of your triggers; so reintroduce and see what happens for the next 72 hours.
This method can be highly inaccurate because of many triggers can be stackable in nature. But it will find your true standalone triggers.
Eliminate All Potential Triggers & Then Reintroduce One At A Time Trial
In this method, you eliminate all known potential triggers from your world. This is a more radical approach, the one I took after all others failed. But for those of us who are suffering from frequent attacks or even daily to multi-daily attacks, this is more than likely the best method to follow as it will cleanse your body and help you to find all your triggers.
I’ll cover the entire plan in more detail in a future article. But in a condensed version, here are the steps:
- Eliminate all known potential triggers from your world
- Wait at least 6 weeks to allow your body time to heal and cleanse. During this period especially towards the end of the time frame, your attacks should be decreasing in frequency, assuming you are on the proper medications as well.
- Once your attacks have decreased to where you feel comfortable, then introduce one (just one) potential trigger and wait at least 72-hours. If during this period, your attacks do not increase in frequency or severity, then this is not a standalone trigger (although it may be a stackable); else, remove it immediately.
- Repeat.
Key 5: Elimination of ALL Your Triggers
Each time you find one of your triggers, you must eliminate it. For those triggers that you cannot eliminate, such as weather and fluorescent lights in public buildings, then you need to develop strategies for managing and controlling the trigger.
For example, fluorescent lights are a huge trigger for me. I wear special wrap-around sunglasses that completely conceal my eyes (they have side and top shields) and are for extreme photosensitivity (photophobia).
Written by: Tonya L. Mork